Member
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Registered: ‎26-09-2018

Re: If you had or are going to have a mastectomy

Hi Mai,

 

Thanks for your good wishes and I hope you have a wonderful Christmas with your family too. I have always been grateful for my lovely family and wide circle of friends, but goodness, these past seven months have made me appreciate them even more!

I love the imagery of you on a horse, galloping throught the countryside, with a counsellor galloping alongside! 

I always used to find running a fabulous release. Headphones on, wind in my hair, and alone with my thoughts. I have a radiotherapy planning appointment today, and I shall ask if I can start running again. It is almost five weeks, post-mastectomy.

 

Jane xx

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Re: If you had or are going to have a mastectomy

Carol Lina, I think it would be a good idea for you to chat with the nurses on here to help you get a bit more clarity on what is happening.  xx

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Re: If you had or are going to have a mastectomy

Janie, the best counselling I've received has been equine therapy.  It was great to be in the countryside with a horse and I had to shout for the counsellor to hear me.  That kind of forces the emotion out of you in a strange way.  I hadn't been able to talk about my surgery until recently.  I just couldnt even begin to put it into words before.  I'm sure I'll get there in the end with the decision.  My kids too will be home from Uni soon.  Glad to have been here for you and I hope you have a fabulous Christmas with your family. xx

Member
Posts: 93
Registered: ‎29-10-2018

Re: If you had or are going to have a mastectomy

Pastasmissus, I'm very glad you can deal so week about being flat. You're blessed. Unfortunately it's complicated for many women. Although I think that my life is more important, I can't feel "normal" about losing any part of me. I "was made completed" and losing any part of my body is very painful to me.
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Re: If you had or are going to have a mastectomy

I forgot to tell you Mai that I'm sorry to here you have issues about reconstruction. Although I'm sure they'll find a good solution for you :-). I know that look at "my new shape" would be a cancer reminder to me too, so I don't want to look at that.
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Posts: 93
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Re: If you had or are going to have a mastectomy

Thanks Quaggie for your advices. What hard time you had, going through surgery three times :-(. I'm happy that you're feeling well(as much as possible) about this journey!
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Re: If you had or are going to have a mastectomy

Many thanks, Jane, for explaining what DCIS means( what I knew about it was that is still inside of the duct (not invasive tumor). Thanks for clarifying ;-)
Member
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Re: If you had or are going to have a mastectomy

Hi Mai, they told me few things(something that I don't like here is that they don't give us any exam. I hate that, it's supost just to believe in doctors whiteout seeing anything? I didn't even see any picture from my MRI(and he has changed his mind TWICE after seeing the results. How can I trust?). He told me that it's estrogen positive and protein negative (although there's something else which needs to be comforted the more biopsy). He suggested using Tamoxifen for ten years :-(
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Re: If you had or are going to have a mastectomy

Hi Mai

Thank you for posting. I think you are right- I do feel that my trauma has been trivialised. I also feel that I have, on the whole, worked through my emotions by talking with family, friends and ladies on this forum, so I don't feel that I need counselling now, but I needed it at the time. I still have had no follow up to the survey that they sent to me, when I indicated that I was very traumatised by the mastectomy.

 I wish you luck with coming to the right decision. Thank you for the pertinent points you make. I, too,am very grateful to be alive, and I am enjoying life too. So looking forward to Christmas- children home from Uni and the house will be full- that's when I am happiest!!

Best wishes

Jane xx

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Re: If you had or are going to have a mastectomy

pastamissus,  I can keep my mind distracted very well intellectually but I can't sugar coat what I've been through.  I think I was very detached about it early on after surgery but less so after a year.  I'm pleased that you are able to feel unemotional about it.  I'm caught in the middle of  making some big decisions at present and it can be a bit overwhelming at times. 

Member
Posts: 99
Registered: ‎19-09-2018

Re: If you had or are going to have a mastectomy

I went straight for a mastectomy rather than a WLE, as my aunt has had breast cancer 4 times, and I was worried about needing further operations if the margins weren't clear with a WLE.

I think I am very odd, it didn't bother me at all losing my breasts (got it in the other one, so had second mastectomy 6 weeks later). I live in my head rather than in my body, and am a doctor, so I really didn't feel any emotions about it at all, it was just necessary.

I also didn't want any kind of reconstruction. I now have prosthetics, but am happy flat. For anyone who is also flat (even if temporarily) there is a group called flatfriends which is really good.

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Re: If you had or are going to have a mastectomy

Carol Lina, do you have your full diagnosis?  Have they given you scan results?  Are they asking you to decide on mastectomy or lumpectomy?  If the decision is yours its usually because you are borderline.  Mine was a clean cut decision based on having an invasive and diffuse tumour.  Will you be going onto endocrine therapy (Tamoxifen or Letrazole) afterwards or are you TNBC?  xxx

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Re: If you had or are going to have a mastectomy

[ Edited ]

Janie123, it is a tough call: caught between being grateful to be alive and traumatised by events.  When I was told I'd need an mx I said to the nurse "well there's not point in a well conserved breast on a dead body" which I still believe is true.  A satisfactory reconstruction is more about sanity than vanity so yes, the emphasis on mental wellbeing should be considered but not hurried at the expense of a better outcome from waiting a bit. Maybe, not being offered proper counselling means your trauma somehow feels trivialised and you are left to muddle along?  Just another perspective to consider.   I'm a year post-mx now and my mx has only affected how I feel about myself.  I keep it covered up all of the time (except in the bath/shower) so I dont have to think about it because I feel that it's a reminder of cancer for me.  I should develop an attitude like the "Monty Python - just a flesh wound" scene!  I have an appointment over the Xmas period for a second discussion on reconstruction.  I don't have any belly fat so a DIEP flap isn't an option.  The other complication is that I had symptoms of inflammatory breast cancer and an implant isn't usually an option after that ....... but I'm grateful to be alive and enjoying life, oh yes I am.  xxx

Member
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Registered: ‎26-09-2018

Re: If you had or are going to have a mastectomy

You are welcome Daisydi. I have had such amazing support from this forum too. Couldn't do it without all these lovely ladies. I have been following your experiences and I really feel for you. I hope you get the answers you need, on Tuesday. Jane x

Member
Posts: 89
Registered: ‎21-10-2018

Re: If you had or are going to have a mastectomy

[ Edited ]

Now I understand why they have said that if not clear margins of DCIS this time then they will have to do a mastectomy.  I didnt realise DCIS didnt respond to chemo.  Thank god for this forum and thank you Janie for explaining.  I am really hoping for positive results on Tuesday as I dont think I can take any more surgery

 

Member
Posts: 91
Registered: ‎21-06-2018

Re: If you had or are going to have a mastectomy

Carol Lina - a mastectomy can feel 'extreme' but I'd hope that the doctors are advising you on the basis of the size/type of the tumour that needs to be removed. If it is very large then a lumpectomy could potentially leave you with a misshapen breast, different in size and shape to the other one.

In my case I had a lumpectomy and they didn't get clear margins, so they had to take more. The 2nd op didn't get clear margins either and after that the surgeon was concerned that taking any more tissue would lead to a significant difference. And there was still some DCIS in place so there might have been even more in the rest of the breast which would have been dangerous to leave alone.

I really think you need to push to see a counsellor or psychologist to discuss your fears and anxieties. Your breast care nurse should be able to refer you to one but you will have to push and keep pushing for it.

It's also worth looking online to see if there are any local cancer charities that offer free counselling services. I did a Google search and found one in my area - I see a counsellor on a one to one basis there every week.

Often these services aren't offered to us but we need to ask and push, and make a nuisance of ourselves to get what we need.

I hope you can get the answers you need - if you're uncertain of what you're being told by the doctors then you could also call the Breast Cancer Care helpline who have nurses available, they might be able to explain terms or the likely reason behind the surgeon's thoughts on the need for a mastectomy.
Member
Posts: 138
Registered: ‎26-09-2018

Re: If you had or are going to have a mastectomy

Hi Carol LIna,

 

I only had one surgery ( the mastectomy). The DCIS is not classed as cancer ( it is pre-cancer) with the potential to become invasive. There are three grades, depending how close they are to normally dividing cells. I had some high grade DCIS, and some low and intermediate grades ( so all three grades). There was 8-9cm of DCIS of these three grades, and the 4cm of high grade became my invasive tumour ( which was resolved with chemo). So I had the mastectomy because,, although all my invasive tumour was gone, the DCIS ( which my bcn called pre-cancer cells), is not treated by chemo- it can only be removed surgically, and as my DCIS was so big in relation to the size of my breast, they had to do a mastectomy. I am still having radiotherapy because tumours of 4-5cm have a slightly higher chance of recurrence, so the radiotherapy will hopefully prevent this.

Maybe some of the above may apply to you, and may be why they are recommending a mastectomy?

 

Love Jane xxx

Member
Posts: 93
Registered: ‎29-10-2018

Re: If you had or are going to have a mastectomy

I didn't tell you all the changes which has been happening during my appointments because I didn't want to make you confused. It seems to me like my doctor is not sure what to do with me. It make even worse, all the time I go there I'm afraid about what I'll hear and I am never prepared for that because all the time I'm told a different thing. Sometimes I wonder if it's not too much to suggest a mastectomy(when they told me that, they didn't have even scan results). Don't you think it's a too agressive treatment? In my country it's not the "normal". I feel afraid one day to go there and a friend ask me why I left someone do this to me when they don't usually do there. It's proved(when it's possible to be done) that lumpectomy followed by radiotherapy is as safe as mastectomy. I'm feeling so confused. I'd like to be treated in my onw country, but as I gave up of my job there I no longer have health insurance :-(
Member
Posts: 93
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Re: If you had or are going to have a mastectomy

Hi Quaggie, welcome to the thread and thanks for your best wishes! No, my surgeon didn't tell me anything about psychologist. My nurse told me to look for help in some kind of group in another city and that's all. I can't go there and I'm not able to talk to a group(but here, where we don't see each other. I'm quite shy person). A psychologist from the hospital or GP, to talk only to me, I wasn't offered.

May and Jane, it's exactly as I feel and yes, it's normal life to the staff, but it's a big deal to us :-(
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Re: If you had or are going to have a mastectomy

Hi Helenann! Don't worry, you didn't make me feel bad, it's just that I realised that word could, not offend, but maybe hurt someone here. Thanks again for your support. It means too much for me ;-)